Living in the US with a Latin Attitude & a Bilingual Mind

“Chagas” disease, an insect-borne parasitic disease, is common in Central and South America, with more than 8 million people affected by the illness and over 23,000 deaths from it annually. While commonplace in Latin America, Chagas disease is widely unheard of in the United States — until now. It is deadly, it is spreading quickly, and most of the world has never heard of it. “Chagas” is spread by the “vinchuca” bug’s bite.

In rural Argentina, villagers speak of “muerte subita” or rapid death caused by Chagas. It can eat away all of the cardiac muscle until the patient’s heart ruptures. It can devour the intestinal wall leading to toxicity and massive internal bleeding. It is incurable in adults and, while it is not always fatal, it is almost always debilitating.

Uncommonly warm weather is encouraging a northward migration of “kissing bugs” the insect responsible for transmitting “Chagas” disease. The disease can be asymptomatic and stay dormant for years. Caused by the parasite Trypanosoma cruzi (T.cruzi), Chagas disease affects a suspected 300,000 people in the United States, though only 7 cases were reported last year. The low incidence of reporting is likely related to how the disease mimics other, less serious issues, and is often without symptoms.

Back in 1835, Charles Darwin was on a trip to Argentina when he recorded a bite from what he described as a great, wingless, black bug. Darwin wrote of the creepy the sensation of the bugs crawling on his arm, and how the insects were thin before they took their blood meal. According to researchers from the University of Maryland School of Medicine, Darwin was likely the victim of kissing bug bites, and while he officially died from heart issues (as many Chagas disease victims do too), it’s entirely possible the condition was aggravated by Chagas disease.

A major reason why Chagas disease hasn’t taken firm root yet in the United States is because of the higher building standards in the country. Kissing bugs are fairly large, and they are less likely to get inside homes that are fortified against the elements. The species of kissing bug in the United States is also not the same as the species in Central America carrying the disease, but with warmer weather on the horizon, a suspected influx of the critters puts more families — and pets — at risk. Though similar to HIV, Chagas disease is not sexually transmitted, nor does it affect the immune system. Instead, the kissing bug illness causes inflammation of the heart and digestive organs, and can cause irregular heartbeat or heart failure, and ultimately death.

Filmmaker Ricardo Preve believes that diseases like Chagas are a symptom of poverty, lack of education, lack of access to health care and poor housing and solutions won’t be coming from drugs and research but political action.

“Chagas Disease affects 20 million people worldwide,” Preve said. “It kills nearly 50,000 per year and is still treated with medications that are 50 or 60 years old and produce very severe side effects.”

Filmed in Argentina, the U.S. and Europe, Preve’s documentary on Chagas disease gives a voice to people suffering from the condition, and to those working to find a cure. While writing a script for a fiction film—a love/hate story between a doctor and a woman who worked for a pharmaceutical company—Ricardo came up with the topic of Chagas. Growing up in northern Argentina, he was already aware of the disease. “Even if it is a fiction film, I will investigate.” he said. “The documentary was the result.”

Documentary producer for National Geographic and now for Al Jazeera, Preve is currently producing his third documentary on Chagas. The second one was a briefer version with the support of the Bill and Melinda Gates foundation. “I wanted to help find a cure,” he said. “People said I was wasting my time. It was generally accepted that there was no Chagas disease in the U.S, or Europe. People told me, ‘the money is there, but they won’t invest in the cure because they don’t have Chagas disease in their countries, there are no kissing bugs there.’”

Widespread in Latin America, Chagas disease, also called the “AIDS of the Americas,” is a serious and potentially fatal infection, caused by Trypanosoma Cruzi, which spreads by blood-sucking insects known as kissing bugs. The filmmaker found that the U.S. was not testing blood or organs for Chagas disease. Interestingly, Ricardo said, a little after the documentary came out, the FDA approved the first national screening of the blood supply (instituted in 2007). Currently it’s estimated that 300,000 or more people in the U.S. are infected with the parasite, and at risk for developing Chagas disease.

Ricardo Preve’s documentary: “A Hidden Affliction”

Preve never went to film school. He worked as an agronomist most of his life. By the end of the century he lost his job as head of a forestry company. One of his friends, a film director doing a science fiction movie, invited him to work with him. “I fell in love with the business,” he said. “It was my opportunity to become an artist.” Working on Chagas disease has been the most rewarding for Ricardo. He grew up in Salta Province in northwestern Argentina where the Chagas disease is prevalent. Many years later, when he started working as a filmmaker, he found out that his childhood’s best friend was afflicted by the disease. He started trying to find out what could be done to help him. But he was immediately struck by the level of ignorance of the general public about what Chagas is, and about the profound human and economic cost of this disease to our society.

At times, it seemed to him that he was the only one concerned about telling the Chagas story. So he decided to use his camera to present the daily lives of those who are suffering from the disease, and to speak to professionals, like Doctor Gustavo Farrugia, who dedicate their lives to fighting Chagas. One of the first things he learned while trying to make this documentary is that the project was a lot more challenging than he had anticipated. As a film director, his job is to communicate a visual language made up of images, yet Chagas is a disease that has very few external symptoms.

A person who we may be interviewing for the documentary could be seriously sick, but there is little visual evidence to show on screen. Even the dreaded “vinchuca”, the insect that transmits the disease, is a master at hiding, concealing itself in the cracks of walls and ceilings of rural homes during the day and only coming out at night to bite and infect people. Ricardo had to really consider how best he would present a documentary about such an invisible threat.

Despite the logistic challenges of making this film, he soon learned that Chagas is not so much a medical problem, as a political and social issue. To him, Chagas is a symbolic manifestation of the level of abandonment and carelessness that governments around the world show to those who are poor.

Doctor Carlos Chagas, the man who discovered the disease, once said: “Speak about this illness and you will have all the governments against you.”

But maybe the tide is turning. Through making this documentary, Ricardo met many health workers, researchers, and social activists who supported him in the production of this film, sharing their experiences and knowledge in the hope that their support will raise awareness and ultimately help Chagas sufferers everywhere.